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  Rare Disorders - World catalog

Contents  > Health  > Conditions and Diseases  > Rare Disorders

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French  (37)  Italian  (33)  Japanese  (15)  

  • National Organization for Rare Disorders, Inc. - Information about NORD, its programs, special events and the variety of services offered. Includes a rare disease, organization and orphan drug database. Diseases are listed alphabetically for easy searching.

    Cherubs
    A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
    http://www.cherubs-cdh.org
    Contact a Family
    Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.
    http://www.cafamily.org.uk
    European Organisation for Rare Diseases
    Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.
    http://www.eurordis.org
    Fibrous Dysplasia Support Online
    For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
    http://members.cox.net/fdsupport/index.html
    Human Growth Foundation
    Information about growth-related disorders through education, research, and advocacy. Member driven organization.
    http://www.hgfound.org/
    Information Centre for Rare Diseases and Orphan Drugs
    Offers an Internet portal. Includes news, forums, rare disease and orphan drug information and registration forms
    http://www.raredis.org/modules/news/
    Kindler Syndrome
    An article and case study of this rare disease. Includes links.
    http://digilander.libero.it/camdic/KINDLER.html
    Office of Rare Diseases
    Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.
    http://rarediseases.info.nih.gov/





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